Periodic Paralysis Association

The PPA is working hard at the MDA conference in Orlando this week to help provide resources to patients with PPP! No one worked the exhibit hall better than Fozzie. ❤️

Lights, camera, action! The Periodic Paralysis Association’s documentary, I Never Fake It: A Medical Odyssey premieres today on YouTube! Grab your favorite snack, settle in, and let’s raise some awareness for periodic paralysis.
https://m.youtube.com/watch?feature=youtu.be&fbclid=IwAR2pBg-Llz5655hIT9J8hKOYO_CmqJF1R_3YoLgNdKreW1rWj5on77VR9jY_aem_AWG4TPg42xJH_vAF-dPsYUG0guXNCjLn2jhtivSc27nJGaOsyCBRm2XvTv0VSE0DFQg&si=LLV8skff0O0SSSDr&v=W6ol0ysjXZg

I Never Fake It: A Medical Odyssey | Full Documentary | PPA Experience Monica's heartfelt and inspiring story as she opens up about the journey of discovering her rare medical condition, and the science which led to h...

Happy Rare Disease Day!!

How do your attacks feel?

Have you had an attack after any of the following?

Any of you experience any of these?

Grab your favorite movie snacks! The Periodic Paralysis Association’s I Never Fake It, A Medical Odyssey Documentary premieres February
29th on the Periodic Paralysis Association YouTube channel!
Watch the trailer today:

I Never Fake It Documentary TRAILER | A Medical Odyssey | PPA Trailer for the official documentary "I Never Fake It: A Medical Odyssey." Explore one woman's journey of discovering she has a rare medical condition, and t...

Aloha ATS family! Rare Disease Day 29th

Hi to our Hypers, today is your day. Rare Disease Day Feb 29th

Highlighting our Hypos, Rare Disease Day Feb 29th

It’s not too late to get your Rare Disease Day T-Shirt! 10 shirts left! Help spread awareness of Periodic Paralysis on Rare Disease Day, which falls on February 29, 2024. Please be sure to DM us your mailing address and requested t-shirt size to receive a free t-shirt. Thank you to our sponsor Xeris Pharmaceuticals® the maker of Keveyis® (dichlorphenamide). KEVEYIS (dichlorphenamide) Xeris Pharmaceuticals
To learn more about Keveyis® (dichlorphenamide) and how Xeris Pharmaceuticals® can provide support and resources to you throughout Rare Disease Month, Rare Disease Day, and every other day, visit https://bit.ly/3Hub6Zo
KEVEYIS (dichlorphenamide)Xeris Pharmaceuticals
Please Note: US Residents Only.
Please click here for Full Prescribing Information and see Important Safety Information below.
What is KEVEYIS®?
KEVEYIS (pronounced keh-VAY-iss) (dichlorphenamide) is a prescription drug used to treat primary hyperkalemic periodic paralysis, primary hypokalemic periodic paralysis, and other similar diseases.
What should you tell your healthcare provider before taking KEVEYIS?
Tell your doctor if you are allergic to dichlorphenamide or other sulfa drugs; if you take high doses of aspirin; if you have lung or liver disease; or if you are pregnant, plan to become pregnant, or are breastfeeding or plan to breastfeed.
What should you know about KEVEYIS?
Severe allergic and other reactions have happened with sulfonamides (drugs such as KEVEYIS) and have sometimes been fatal. Stop taking KEVEYIS at the first sign of skin rash, swelling, difficulty breathing, or any other unexpected side effect or reaction, and call 911 right away.
Tell your healthcare provider if you take aspirin or if another healthcare provider instructs you to begin taking aspirin. High doses of aspirin should not be taken with KEVEYIS.
KEVEYIS can cause your body to lose potassium, which can lead to heart problems. Your healthcare provider will measure the potassium levels in your blood before you start treatment and at certain times during treatment.
Tell your healthcare provider about all other prescription and over-the-counter medicines you take, including supplements, as some medicines can interact with KEVEYIS.
While taking KEVEYIS, your body may produce too much acid or may not be able to remove acid from the body. Your healthcare provider may run tests on a regular basis to check for signs of acid buildup.
KEVEYIS may increase your risk of falling. Tell your healthcare provider right away if you experience a fall while taking KEVEYIS.
The risks of falls and acid buildup are greater in elderly patients.
It is not known whether KEVEYIS is safe or effective for people younger than 18 years of age.
What are the most common side effects with KEVEYIS?
The most common side effects are a feeling of numbness, tingling, or burning (“pins and needles”) in the toes, feet, hands, or fingers; trouble with memory or thinking; feeling confused; and unpleasant taste in the mouth.
These are not all of the possible side effects of KEVEYIS. Call your healthcare provider for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

It’s not too late to get your Rare Disease Day T-Shirt! Help spread awareness of Periodic Paralysis on Rare Disease Day, which falls on February 29, 2024. Please be sure to DM us your mailing address and requested t-shirt size to receive a free t-shirt. Thank you to our sponsor Xeris Pharmaceuticals® the maker of Keveyis® (dichlorphenamide). KEVEYIS (dichlorphenamide) Xeris Pharmaceuticals

To learn more about Keveyis® (dichlorphenamide) and how Xeris Pharmaceuticals® can provide support and resources to you throughout Rare Disease Month, Rare Disease Day, and every other day, visit https://bit.ly/3Hub6Zo


Please click here for Full Prescribing Information and see Important Safety Information below.
What is KEVEYIS®?
KEVEYIS (pronounced keh-VAY-iss) (dichlorphenamide) is a prescription drug used to treat primary hyperkalemic periodic paralysis, primary hypokalemic periodic paralysis, and other similar diseases.

What should you tell your healthcare provider before taking KEVEYIS?
Tell your doctor if you are allergic to dichlorphenamide or other sulfa drugs; if you take high doses of aspirin; if you have lung or liver disease; or if you are pregnant, plan to become pregnant, or are breastfeeding or plan to breastfeed.
What should you know about KEVEYIS?
Severe allergic and other reactions have happened with sulfonamides (drugs such as KEVEYIS) and have sometimes been fatal. Stop taking KEVEYIS at the first sign of skin rash, swelling, difficulty breathing, or any other unexpected side effect or reaction, and call 911 right away.

Tell your healthcare provider if you take aspirin or if another healthcare provider instructs you to begin taking aspirin. High doses of aspirin should not be taken with KEVEYIS.
KEVEYIS can cause your body to lose potassium, which can lead to heart problems. Your healthcare provider will measure the potassium levels in your blood before you start treatment and at certain times during treatment.
Tell your healthcare provider about all other prescription and over-the-counter medicines you take, including supplements, as some medicines can interact with KEVEYIS.
While taking KEVEYIS, your body may produce too much acid or may not be able to remove acid from the body. Your healthcare provider may run tests on a regular basis to check for signs of acid buildup.
KEVEYIS may increase your risk of falling. Tell your healthcare provider right away if you experience a fall while taking KEVEYIS.
The risks of falls and acid buildup are greater in elderly patients.
It is not known whether KEVEYIS is safe or effective for people younger than 18 years of age.
What are the most common side effects with KEVEYIS?
The most common side effects are a feeling of numbness, tingling, or burning (“pins and needles”) in the toes, feet, hands, or fingers; trouble with memory or thinking; feeling confused; and unpleasant taste in the mouth.
These are not all of the possible side effects of KEVEYIS. Call your healthcare provider for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Rare disease Day Feb 29th

Help spread awareness of Periodic Paralysis on Rare Disease Day, which falls on February 29, 2024. The first 50 PPA members will receive a free t-shirt thanks to our sponsorship with Xeris Pharmaceuticals® the maker of Keveyis® (dichlorphenamide). Please be sure to DM us your mailing address and requested t-shirt size to receive a t-shirt. Xeris Pharmaceuticals KEVEYIS (dichlorphenamide)

To learn more about Keveyis® (dichlorphenamide) and how Xeris Pharmaceuticals® can provide support and resources to you throughout Rare Disease Month, Rare Disease Day, and every other day, visit https://bit.ly/3Hub6Zo

Please Note: US Residents Only.

Please click here for Full Prescribing Information and see Important Safety Information below.

What is KEVEYIS®?
KEVEYIS (pronounced keh-VAY-iss) (dichlorphenamide) is a prescription drug used to treat primary hyperkalemic periodic paralysis, primary hypokalemic periodic paralysis, and other similar diseases.

What should you tell your healthcare provider before taking KEVEYIS?
Tell your doctor if you are allergic to dichlorphenamide or other sulfa drugs; if you take high doses of aspirin; if you have lung or liver disease; or if you are pregnant, plan to become pregnant, or are breastfeeding or plan to breastfeed.

What should you know about KEVEYIS?
Severe allergic and other reactions have happened with sulfonamides (drugs such as KEVEYIS) and have sometimes been fatal. Stop taking KEVEYIS at the first sign of skin rash, swelling, difficulty breathing, or any other unexpected side effect or reaction, and call 911 right away.

Tell your healthcare provider if you take aspirin or if another healthcare provider instructs you to begin taking aspirin. High doses of aspirin should not be taken with KEVEYIS.
KEVEYIS can cause your body to lose potassium, which can lead to heart problems. Your healthcare provider will measure the potassium levels in your blood before you start treatment and at certain times during treatment.
Tell your healthcare provider about all other prescription and over-the-counter medicines you take, including supplements, as some medicines can interact with KEVEYIS.
While taking KEVEYIS, your body may produce too much acid or may not be able to remove acid from the body. Your healthcare provider may run tests on a regular basis to check for signs of acid buildup.
KEVEYIS may increase your risk of falling. Tell your healthcare provider right away if you experience a fall while taking KEVEYIS.
The risks of falls and acid buildup are greater in elderly patients.
It is not known whether KEVEYIS is safe or effective for people younger than 18 years of age.

What are the most common side effects with KEVEYIS?
The most common side effects are a feeling of numbness, tingling, or burning (“pins and needles”) in the toes, feet, hands, or fingers; trouble with memory or thinking; feeling confused; and unpleasant taste in the mouth.
These are not all of the possible side effects of KEVEYIS. Call your healthcare provider for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

On January 31, 2024, two nurse anesthesia doctoral students, Lindsay Smart, BSN, RN, and Garrett Boone, BSN, RN, will present their evidence-based practice project titled The Anesthetic Considerations for Skeletal Muscle Channelopathies: An Educational Initiative. These two University of Cincinnati nurse anesthesia graduate students undertook this doctoral project to educate anesthesia providers about each channelopathy, the importance of trigger avoidance, and safe medication approaches. This project team included Dr. William Harr from the Periodic Paralysis Panel of Medical Experts, who served as the content expert.

We would like to thank all of them for their tireless work and dedication in advancing knowledge and awareness. Thank you from all of us here at the PPA for contributing to such an important project.

Merry Christmas! Remember to listen to your body, communicate your needs, and adjust expectations as needed today.

It’s important to remember to take care of ourselves no matter what day of the year it is.

TOGETHER we are creating a better world for people living with periodic paralysis! 🤝

‼️Giving Tuesday Update‼️
We are so grateful to this community! The PPA is only $4,000 away from meeting our Giving Tuesday goal of $30,000! 🏁
Your generosity creates REAL change!

The funds raised today will help the PPA continue to support those living with periodic paralysis through research, educating medical professionals, patient advocacy & support, and spreading awareness. 🧬

Please consider donating to and/or sharing this link to help us, help those living with periodic paralysis: https://periodicparalysis.org/donate2/

Every. Donation. Counts. 🫶🏻

Donate - Periodic Paralysis Association Donate There’s a fundamental truth that gives us hope – that together we can do extraordinary things. Join us on and let’s rally to foster awareness and champion the interests of the Periodic Paralysis Community. Give On Giving Tuesday Donate to Dr. Cannon's ResearchYour gift su...

Donating to the PPA today helps create a better tomorrow for those living with periodic paralysis! 🦓

‼️Giving Tuesday Update‼️
We want to give a big thank you to Xeris Pharmaceuticals for their generous $5,000 donation and continued support for the PPP community. 🧬

The funds raised today will help the PPA continue to support those living with periodic paralysis through research, educating medical professionals, patient advocacy & support, and spreading awareness.

Please consider donating to and/or sharing this link to help us help those living with periodic paralysis: https://periodicparalysis.org/donate2/

Today is the day for giving!

We want to kick off with a huge thank you to J. Raymond Construction Corp. and their generous donation of $15,500 to the PPA! 🎉 We also want to thank them for this wonderful post on their FB page in efforts to help the PPA and the community.

The funds raised today will help the PPA continue supporting the PPP community by donating to research, educating medical workers, patient advocacy, patient support and spreading awareness.

Please consider donating to and/or sharing this link to help support the PPP community. https://periodicparalysis.org/donate2/

J. Raymond is celebrating Giving Tuesday by raising awareness for the Periodic Paralysis Association. Periodic Paralysis is a rare genetic disorder close to our hearts, and we're proud to shine a light on this organization today and every day! Join our mission by sharing this post or contributing to the PPA today.

This season of thanksgiving and every day, the Periodic Paralysis Association is grateful for our community. This community gives a meaning to “not alone”.

Together we are creating awareness for periodic paralysis, educating patients and doctors to together improve patient’s quality of life, funding groundbreaking research, and bringing patients together by creating both in person and virtual (👀) events for the periodic paralysis community.

Tuesday, November 28th is a big day for our community! Giving Tuesday helps to fund the education, awareness, research, and events that are so vital to this community.

You can help us, help you by donating on our website and by sharing our new awareness video on YouTube.

Together, we aren’t alone!

Giving Tuesday 2023 PPA Video Paralysis is an extremely rare disease and you may have a lot of questions, a great resource to help find...

The PPA is in Arizona at the AANEM conference this week! Great things are happening! Be sure to stay tuned!

Help us, help you!

For the past couple of decades the Periodic Paralysis Association has been giving a voice to those living with periodic paralysis. This year on Giving Tuesday (Nov. 28th), you can help the PPA to continue our mission to educate patients and doctors to together improve patient’s quality of life, fund groundbreaking research, and create events both virtual and in person for the PP community (more coming soon on this 👀).

You can do this by donating on our website and by sharing our new awareness video on YouTube.

Together, we aren’t alone!

Giving Tuesday 2023 PPA Video Paralysis is an extremely rare disease and you may have a lot of questions, a great resource to help find...

It’s finally here! Videos of the presentations from the 2023 Periodic Paralysis Association Conference are now posted on our YouTube page! Which presentation did you find most helpful?

https://youtube.com/?feature=shared

Periodic Paralysis Association - YouTube This is the official Youtube Page of the Periodic Paralysis Association (https://www.periodicparalysis.org)The Periodic Paralysis Association is a Non-profit...